A CLINICIAN WHO treated Charlie Gard, the terminally ill British baby who died last week, has said his short life became a soap opera fuelled by interventions from US President Donald Trump and Pope Francis.
The situation drew world attention and sparked a debate about medical ethics, as his parents Chris Gard and Connie Yates fought a lengthy legal battle to allow him to be taken to the United States for experimental treatment of a rare genetic condition.
London’s Great Ormond Street Hospital (GOSH) wanted to remove his life support, and some staff received death threats. One GOSH clinician, writing anonymously in The Guardian newspaper, has said they had a “legal and moral obligation” to say “enough is enough”.
“Like all of the staff who work in our unit, I loved this child to bits. But it got to the point where there was nothing more we could do,” the health worker wrote.
Charlie died in a hospice on 29 July, one week short of his first birthday.
The clinician said they believed Charlie had effectively been kept alive for people such as Trump, the pope and UK Foreign Secretary Boris Johnson, who “suddenly knew more about mitochondrial diseases than our expert consultants”.
Mark Harty SC, who represented a family involved in a similar case that came before the Irish High Court in 2014, recently told TheJournal.ie situations like this can lead to the people in question becoming ”part of someone else’s agenda, to the point it’s no longer about your child’s needs“.
“As is the case in Charlie Gard’s case, it’s now about the everybody but Charlie Gard. The parents are tied up in a circus,” Harty said.
Petition
Some 350,000 people signed a petition demanding Charlie be allowed to receive experimental treatment in the US, and over £1.3 million (about €1.46 million) was raised online to fund this.
The clinician wrote: “Over the last few weeks, parts of the media and some members of the public have turned a poorly baby’s life into a soap opera, into a hot legal issue being discussed around the world.
The case has also had an effect on other families here. Parents are nervous, they worry that we might not do the right thing for their child. That worry is not based on the care we are giving; it’s based on what you have been saying about medical staff you have never met.
Charlie was born on 4 August 2016 with a rare form of mitochondrial disease that causes progressive muscle weakness, including in key organs such as the heart.
The case triggered debate about whether parents or the state should have a final say on a child’s wellbeing and if a child’s fate should be settled in a courtroom.
- © AFP 2017, with reporting from Órla Ryan
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